This will be a long post, but offer some valuable insight and lessons I have personally learned as well as from what I am seeing from family, friends, and on the Internet recently.
One of my good friend’s father is demonstrating signs of late-stage dementia. He asked me if I had any recommendations for bed alarms because his father has fallen out of bed multiple times over the past few days. He could have just as easily googled this question on the Internet, but I am glad that he didn’t. The Internet, while very useful and can provide good advice, is often general information and not expert opinion based on a specific situation. The first thing that came to my mind was, “okay, bed alarms, where do I start?” Then I thought it was better to take a more top-down approach. Let’s back up. Maybe we should look at other environmental modifications first. I was taking a more compensatory approach as I believe remedial strategies would be less effective due to poor learning and memory retention. Being that I was a little rusty on my dementia interventions, I looked in my OT textbook. Nothing. So I naturally googled environmental modifications myself.
I actually found a really good resource from a website recommending how to prevent your loved one from wandering using environmental modifications. However, this was a list of recommendations, in no particular order, albeit organized by category based on environment, type of technology, etc. This was the idea for this post, because if my friend found this website himself, it could potentially be very useful, depending on the recommendation he chose. However, it is still not as useful as consulting with a professional such as an occupational therapist as this leaves many things to chance.
If my friend just went down the list and tried the first thing that was recommended (alarms), it could have been a bad idea because this is considered a more extreme intervention. Among other things, occupational therapists know to start low then go high (low tech before high tech) and providing the least disruptive intervention before trying more extreme ones. My friend and his family could very well experience alarm fatigue and dismiss alarms in the future after trying it when instead, his father may have benefited from just a sign on the door to prevent wandering in the night before going the alarm route. The alarm may not even be needed. What is more likely to be causing him to get out of bed is likely the need to urinate in the middle of the night and attempting to go to the bathroom. So I actually recommended they try to avoid fluids before bedtime and to see how that goes first and rearranging the bed set up, e.g., against the wall, to prevent falls.
Why consult with a professional such as an occupational therapist?
An occupational therapist does many things:
- Considers the individual. This is called building an occupational profile and conducting a through assessment of the background. If they were in a hospital, it would be called a chart review or looking into their history. In contrast, someone who is reading this on the internet likely would not do this type of critical thinking.
- Considers the individual’s body systems: age, senses, balance, strength, endurance, range of motion, etc.
- Considers the environment. What is the immediate environment that this person lives in? How is the lighting? Are there fall hazards? Is it optimal for daily functioning? Should things be re-arranged or better placed or even hidden and camouflaged, e.g., doors?
- Considers the habits and routines. What would this person normally be doing at this time and why?
- Considers the level of assistance required. Is what this person doing unsafe and would they need a helper? Or can they learn to do things by themselves? Often, with late-stage dementia, learning is more difficult, and more caregiver assistance is often needed, possibly leading up to 24/7 supervision.
- Considers the strengths and weaknesses. What does the individual do well? Not so well? How can we address each of these?
- Considers motivation. What is this person motivated by or interested in doing?
- Considers occupation. What activities or occupations does this individual participate in doing?
- Considers mental health (psychosocial) factors.
An occupational therapist often considers these factors and much more when using their professional reasoning to come up with a solution for a problem. They may also do what is called an activity analysis to break down an activity into component parts before coming up with a recommendation.
And that is risk of just googling something and not consulting with a professional. With the Internet, this practice is becoming more common.
My theory is because (1) it is accessible, you can just google something (2) there is a lot of good information out there, with more growing every day (3) the information or personalities, e.g, YouTubers, seem to know what they are talking about (even if they don’t, “fake it til’ you make it”) (4) we may think a solution is easy to be fixed, when in reality, we may be better off with expert opinion (5) it becoming more acceptable or common practice for your belief system to look and do things yourself and (6) influencers or micro-influencers have an influence on us (subconsciously).
Many things can be DIY: home improvement, learning a skill, learning a foreign language, learning a new sport, learning photography, learning to play instrument, but many things should not be. Having a doctor diagnose your cancer, having someone create an estate plan and will for you, having someone like a team of healthcare professionals manage your life after a car accident, having someone train your dog who is aggressive towards humans, or having someone fly your plane to a foreign country – should all be done by professionals. But with mHealth, self-triaging and self-diagnosing is becoming more common.
Modern technology makes DIY’ing and finding the answer anything so easy. You can look on WebMD and diagnose your symptoms. You can watch a YouTube video and learn anything (from a stranger on the Internet). You can find a partner on a dating website (it worked for me). You can file your taxes or ask how to fill out a certain line item with Turbotax. You can manage your own finances or buy some stocks on Robinhood. Online banking apps are just a download away. You can ask a question on Reddit or your favorite Facebook group and get an answer immediately.
And yes, you can look up ways to prevent your loved one with dementia from wandering too, but that does not necessarily mean you should do it. It can cause them to get aggravated, do more harm than good, cause tension among family members, you could waste a lot of money trying products or solutions that don’t work, or you could even get scammed into a product or service that is bologna (e.g., a home remedy) and not evidence-based and backed by research. You should consult with a professional when it comes to the safety and wellbeing of your loved one.
Research shows that people who look up symptoms and ‘self-diagnose” their symptoms often get it wrong. 1 That’s not surprising. Otherwise, why would we need doctors or psychiatrists to diagnose for us? Sometimes even doctors get it wrong. It can be downright scary the type of advice I see given on the Internet. I wouldn’t be surprised if people took this seriously and accepted it because they do.
My wife was on a subreddit for people who supposedly fake their illnesses. One stranger asked another who supposedly had a chronic medical condition what they do about disposing of needles when traveling. The advice given was, “just throw it away in the trash”. Throwing away sharps in the trash is NO-NO as every nurse would tell you. It’s kind of common sense, but common sense does not apply when it comes to humans sometimes.
So the Internet has its pros and cons. It allows anyone to talk to anyone else on the other side of the world. It can connect people, such as those with rare medical conditions together and allow them to build a community. I am using it for occupational therapy students, practitioners, and the general public. However, it can also be downright dangerous. The Internet gives those with (good or bad intentions) a strong and loud voice. Rumors, bad advice, and false information can spread like wildfire over the Internet. We are seeing this with controversial groups and conspiracy theorists with COVID-19 alone.
This is why professions and professionals exist. In some states, someone who is a professional, e.g, doctor, nurse, physical therapist, is not allowed to start an LLC (limited liability company) nor a PLLC for that trade e.g, nursing practice. 2 However, this same person, e.g, a nurse, can start an LLC for a restaurant or a clothing store. This is because professionals are believed to be held to a higher standard for their trade. They would instead have to go through a more rigorous process and be required to instead start a corporation with more requirements for a professional trade. That’s a good thing. You want that. It sucks for the professional looking to start a business, but it’s there to protect the public.
We all know that we should be careful when taking advice from strangers, but we do it anyways. Just because you ask a question on a specific forum or group, e.g., Facebook group, does not mean the answer is correct or best for your situation. Facebook groups can be downright dangerous as they can lead to groupthink and you never know what agenda someone may have (it’s often for money).
I stopped checking an OT Facebook group for entrepreneurs after one member asked for recommendations to bring in extra income. It was something along the lines of them not specifically stating that they were not interested in things like blogging, writing an e-book, or creating a course (all legitimate and smart ways to make extra income), but they asked for people’s input on what types of MLMs they were involved with and recommended. Per the FTC, MLMs are pyramid schemes…which are scams. 3 Unfortunately, this was an occupational therapist. I hope this person decides to avoid MLMs, and yes, you should too.
Even my own family members believe the COVID-19 vaccine is implanting humans with trackers. 4 I actually think this is a great idea. I am kind of serious about this. I told my wife that if I came down with dementia at an older age to sign me up for such a technology if it would keep me safe due to wandering. A GPS tracker that does not get in the way of my daily functioning like a wearable GPS would. It’s like a microchip for humans. There’s a great invention idea.
So people are taking the DIY self-learning route more than ever. I have seen this false spreading of information among the Chinese community with Apps like WeChat. If you are Asian, you know what I am talking about. In the Asian community, often Chinese community would unknowingly forward links, videos, or false information to their family members and friends without much regard for the source and the integrity of the source of that information. 5 And these are adults and older adults, not teenagers by the way. (Nothing against teenagers, they can just be impulsive.) I imagine the same kind of thing is happening with Americans who use the Internet on all sorts of websites, Apps, groups, chat services, social media, etc.
So the same applies to the virtual relationship between me and you. I am a stranger on the Internet as you read this blog, and you should research and critically evaluate the content I post (even though I try to be a reliable source of information, cite my statements, and uphold the professional standards and ethics of my occupational therapy license).
The general public does not know what the profession of occupational therapy does (in my opinion, but you would probably agree), what the value of OT brings to clients who can benefit from their services. But in reflecting on my friend who sought my advice, it reminds me that OT practitioners and the profession can bring a lot of value to the public.
As human civilization progresses and as technologies become more commonplace (who doesn’t have a phone and can access the Internet nowadays), OT will need to develop and progress with it in order to be relevant. Today, in 2021, OT can bring a lot of value to a lot of people. I would love to see OT practitioners more in the consulting role backed by evidence-based interventions. As long as the theories and interventions we provide are backed by evidence from science and research, I am confident that OT will always provide value to the community. But the moment OT practitioners rely on old, outdated, unproven approaches, the faith and integrity and reputation of the profession can be jeopardized. And this is happening, unfortunately with the young and old OT practitioners.
As students, it can be intimidating to speak up or talk about the latest and greatest OT theory or interventions. But I encourage you all to do it. Just because you lack experience does not mean you cannot provide some value to more experienced practitioners. When I was an EMT, I learned that the practice of using a tourniquet was common, then not recommended, then re-recommended again. 6 This is an example of how something you learn in school may be believed to correct and best practice at the time, but turns out it’s no good at some point. An example is psychodynamic therapy. It’s no longer considered to be an appropriate intervention for clients. 7
So as hard as it may be, don’t get too attached to a theory or approach or intervention or protocol or something you think is right. It can be ineffective. People change. 40 years ago, barely anyone had access to computers. Think about how society is so much more different now with the scientific and technological advancements that have become mainstream. Our behaviors and habits have literally changed. We wake up and check our phones. Before cell phones, people woke up and did something else, like talk to their partners or got up and started their morning routine. As society changes, so do occupational therapy approaches and interventions. Theory definitely can as well. Early theorists didn’t factor iPhones into how humans behaved, learned, or managed their disabilities. I believe theories, even the proven and well-accepted ones, should be re-evaluated, updated, and continued to be researched because people and society changes the way life changes with the technology we have.
This is why we need professionals like occupational therapists. One day, when I get old, I’ll probably need to see an occupational therapist too because what I know is outdated and ineffective. I’ll have to see an OT myself about how to operate my automated self-flying car as I hope to age in place.
What kind of professionals should you consult with instead of DIY? Consider talking to them if needed. As of this year alone, I have talked to an insurance agent, an intellectual property attorney, estate planning attorney, and an arborist. I know these professionals may cost money and you may not have the finances, but consider that the advice they give and their expertise could end up saving you more money and preventing future problems. The key is to shop around, ask for referrals, and verify their credentials and credibility.
What theories, models, frames of reference, beliefs, interventions do you practice and believe in? Consider researching or moving on from it and adopting newer, better alternatives. You wouldn’t write a book series with pen and paper these days instead of using a word processor, so the same applies to everything else. Work smarter, not harder. When people have technology issues who do they often ask? A teenager.
If you are an OT practitioner who has been doing things for a while, I bet you probably have a smartphone, e.g, iPhone that you use to look things up with instead of dusting off a textbook from the shelf in the OT office. Consider the possibility that your approaches are outdated and ineffective and ask an OT student what’s new and cool. If not for you, do it for your clients and their families who are spending their time, effort, money, and are depending on you.